The Complexity of Arnold-Chiari Malformation

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Biology 202
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The Complexity of Arnold-Chiari Malformation

Nicki Lynn Pollock

To the medical doctor, Arnold-Chiari Malformation, which may have a genetic link, is characterized by a small or misshapen posterior fossa (the depression in the back of the skull), a reduction in cerebrospinal fluid pathways and a protrusion of the cerebellar tonsils through the bottom of the skull (foramen magnum) into the spinal canal resulting in a multitude of sensory-motor problems and even some autonomous malfunctions (1). These many symptoms can come in a variety of forms which often makes a clinical diagnosis difficult. To the patient this disorder can present not only physical difficulties but also mental distress. Treatment options and their success rates vary widely, and proponents of the cause are demanding more recognition, research, and success. The study of Arnold-Chiari malformations can lead to additional questions and new understandings about the I-function, sensory-motor input/output paths and the general make-up of the brain and nervous system, but a complete understanding of the disorder may be a long time coming.

Impairment and sometimes loss of motor control of the body and its extremities is one of the many effects of this disorder. Patients may complain of headaches, neck pain, coughing, sneezing, dizziness, vertigo, disequilibrium, muscle weakness, balance problems, and loss of fine motor control (1). The senses (hearing, sight, smell etc.) may also be affected in deleterious ways. On can have blurred vision, decreased sensation of limbs, unable to locate them without looking, decreased sense of taste, ringing of the ears etc. (2).

Two ideas about the nervous system that can be better understood from these observations are the concepts of having and locating the I-function. It seems that the I-function here is very often affected in terms of voluntary movement. A person with Arnold-Chiari malformation who has lost the feeling in and control of his arm for example will not be able to move it even upon someone's request and his or her own desire to do so. Some use of the I-function is definitely impaired. However, these observations do not seem to necessarily imply that some part of the I-function was damaged, because it may very well be located elsewhere- connections may have simply been lost. A person with Arnold-Chiari can still think and have a sense of self, but somehow can not connect with the various body parts that can be affected. Some uses and pathways of the I-function can be understood, but the exact location of it remains vague.

A lack of sensory input can also provide clues about pathways within the nervous system. Depending on the severity and specific location of the Chiari malformation different senses may be affected. Again, the location of where this information is processed can not be determined for sure from these observations alone. It is obvious that the pathway needed for sensory information to travel is indeed affected but not the ultimate processing center itself.

Recently, diagnosing this disorder has become relatively easier with the advent of the MRI (magnetic resonance imaging) so that doctors and patients no longer have to rely on a symptom-based diagnosis which was troublesome for both (3). The symptoms vary widely and encompass many parts of the body. Many deemed Arnold-Chiari sufferers the victims of some psychosomatic disease before the biological nature of the disorder was understood (5). Now, with the possibility of having a genetic predisposition for Chiari and the early detection devices available, one can more easily be diagnosed properly (2).

There are both medical and non-medical ways to treat Arnold-Chiari malformations. When symptoms develop, patients should seek a doctor's advice to consider a posterior fossa and upper cervical decompression. This procedure can provide more room around the lower brainstem and promotes improved neurologic functioning, though it is not a guaranteed solution (3). Patients may also benefit from various and symptom appropriate forms of physical and occupational therapy. Some patients also explore non-traditional options such as herbal therapy, acupuncture and others (5).

The symptomology of Arnold-Chiari malformations can lead to many useful observations of the pathways used by the nervous system to maintain control and awareness of the body in terms of the I-function and sensory-motor abilities. However, due to this large range of symptoms and the fact that current attempts to treat them all are not always successful, there may be other things going on in other areas of the nervous system which contribute to the overall effect of Chiari. The situation at the base of the skull, where the malformations are readily noticeable and are thought to be the cause, may be more complicated then believed or known at the time. As always, a better understanding of what is actually happening in patients with Arnold-Chiari malformation is needed.

 

WWW Sources

1)American Syringomyelia Alliance Project Inc.

2)Chiari Information Exchange

3)Division of Neurosurgery Begins New Study of the Chiari I Malformation

4)National Institute of Neurological Disorders and Stroke: Chiari Malformation

5)World Arnold Chiari Malformation Association

 

 

Continuing conversation
(to contribute your own observations/thoughts, post a comment below)

10/18/2005, from a Reader on the Web

I am writing these comments to ask for help of any kind on my situation. I was diagnosed with arnold chiari type 1 in june of 2001, i had the surgery in august the same year. it was successfull for about 3 1/2 untill i had a fall a work in april of 2005 which i struck the back of my head on metal racks. since i have had all of my symtoms return plus more. My case is very extrodinay due to me having to neck fusions prior to my chiari surgery. I have only seen 1 nuroligist and 2 spine and pain specialist and a nerocycoligist which all say that i am fine to return to work, but i still have severe headaches, sneezing, numbess in left side extremeties, drop attacks "falling spells" abromal sentations of extremeties, ring of the ears, double or blured visions. The only treatment that I am gettings is from my local faimly doctor who prescibes me 50mg Oxicotine pills to help with the headaches. If your are aware of any documentaiton or programs that can help me or you need more information PLEASE help.


11/20/2005, from a Reader on the Web

I have found a wonderful Neurosurgeon at the University of Colorado his name is Dr. Jen-Peter Witt. I suggest you contact him, possible he can help you. Good luck.


12/20/2005, from a Reader on the Web

Do not know where you are located, but please consider seeing Dr. Dan S. Heffez at the Milwaukee Neurological Institute, 414-438-6500. I, too, had surgeries to the cervical spine, and very recently surgery for Chiari Malformation.


01/27/2006, from a Reader on the Web

I also had decompression surgery in 2002. My symptoms improved until I returned to work. Then they became more severe. Everyone keeps telling me that I'm having migranes and symproms cannot return after surgery. I worked at a local hospital for fourteen years, they relieved me of my position in May because I could no longer perform my duties. It's hard to play with my children, I've gained weight, and riding in cars is hard. It's even difficult to look at a computer screen for more than five or ten minutes. If you can offer me any advice or suggestions on where to get better treatment I would be appreciative. Thank you.

Additional comments made prior to 2007
I have Arnold Chiari like Symptoms but am told I do not have the disorder because my cerebellar tonsils only descend 4mm rather than 5mm. Meanwhile no nuerologist makes any sense or diagnosis of what is causing my symptoms. I am written off as crazy. The only help I have received was from a physical therapist who does cranial sacral treatments in which they can apparantly work with the flow of cerebral spinal fluid. But, medicare is doing a new monitering system of what Physical therapists can do in their practices and will no longer pay for these treatments. I had already lost most of my financial resources when these symptoms first appeared in Dec 2001 due to becoming unable to work plus spending alot of money on alternative medicine and help with activities of daily living. I am a single divorced parent and it has been very challenging. I had stabilized within a life with many physical limitations when my son and I were rear ended in Jan 2005 by a hit and run car acccident. The PIP quickly ran out and this time with out the personal financial resources I had when my symptoms first appeared, I have been unable to pursue much help. And "without a diagnosis", I "have no case" to pursue more medical help through the auto insurance. The car accident not only aggravated prior symptoms but added many including trouble swallowing, trouble breathing when supine, urinary incontinence. Since the car accident I can only lay if inclined, the degree of incline dependant upon how bad symptoms are. At its worst I must sit up or stand to prevent intollerable symptoms. But because my MRI has only 4mm herniation rahter than 5mm I am treated as if my symptoms are irrelevant or that I am a psych case. Does anyone know about CINE done with an MRI or any other way of diagnosing Arnold Chiari other than the classic 5mm drop? Or does anyone know of an Arnold Chiari specilist near Portland Oregon? Seattle? SanFrancisco? ... Sheila Moran, 24 August 2006

 

 

Hello everyone. I live in Calgary Canada, and had surgery for Chiari Malformation in 2003. I have since had all my symptoms return. My family doctor has decided my condition is to complicated and has discontinued my care. I now do not have a doctor, my surgion has moved and there is no support in Calgary that I know of. I am a 42 year old female and can't take this pain anymore. No one understands how I feel everyday. I just want the pain to go away but it never does. I would appreciate any information on Chiari or any Canadian resorces. Please help ... Jacquie, 10 September 2006

 

 

I was diagnosed with ACM in April of 2004 and was going to have surgery the following month. During routine pre-surgery bloodwork they found me to have Von Willabrons disease with is a rare blood disease. Now my Dr. doesn't think it is safe because of possible complications with my blood. I have one of the top neurosurgeons in the nation by the name of Swiad N. Swaid. Yes, that is really his name and he is at Brookwood Medical Center in Birmingham, Alabama. Has anyone had any similar problems? ... Angela Dye, 16 November 2006

 

 

How are you doing, I was diagnosed in february of this year. I had surgery on June 5, 2006 and I am doing wonderful. My doctor name is David Barnett and Baylor Medical Center downtown dallas. He is a wonderful, patient and he is a christian. He told me I had one of the worst cases he had ever seen and that my progress is great. I have returned to work and I am back at school. I travel out of town and I feel great. Please give him a call I know he could possible help ... Ruby Canty, 4 January 2007

 

 

I was diagnosed with ACM over 10 years ago....it has recently become so bad that I lose vision and often black out. I went back to my neurologist and he did an MRI and an electrode scan and found that I have a major blockage....I am now waiting for the surgeons office to call me to set up an appt to do the surgery. However, I am terrified to death to go under for fear of not coming out of it ok. I have a 6 year old daughter who depends on me and thats what my main fear is. Can anyone explain to me about what happens in the surgery and afterwards??? Thank You ... Natashe Harrison, 23 January 2007

 

 

I have just been diagnosed due to a serious fall I had Dec.a year ago and have been referred to a neurosurgeon at Shands Gainesville, UOfFla. Can anyone explain the surgery to me. I came home after finding this out and had a few glasses of wine to cope. Truthfully I am scared. I am 58, took a fall in a pot hole at a convenience store which broke my ankle, tore the miniscus in my right knee and both rotator cuffs. I also hit my head on the curb so hard it knocked me out for seconds. Any info would be so appreciated ... Marilynn, 25 January 2007

 

 

try having acs with fibrous dysplasia in the whole left side of your head and most of your left side of your body ... M.C. Wiggs, 12 February 2007

 

 

I don't know where you are located, but Dr. Steven Swanson at the Michigan Brain and Spine Institute in Ann Arbor/Ypsilanti, MI. was fantastic. I had decompression surgery 10 years ago, and have only recently had some minor symptoms, probably due to 4 pregnancies in those years ... Megan, 3 May 2007

 

My daughter has pain levels of ten, she is not decompressed with 7 mm herniations. We are taking her to the Chiari Institute hopefully in July, and we have to have the dilaudid, an opioid, for the intractable chronic pain. Under the WV code laws, opioids can be overridden by a physician for this kind of pain.

Her pain is left eye oribital centering with the whole left quadarant of her head hurting like someone, she says, "hit her with a baseball bat." WE are trying to manage the pain, with vicodin in less quantities, and she is now in the hospital taking the dilaudid along with diamox, by a dr. who suffers with chiari too. It is a small world, and my chiari is 2mm, and in late fifties, I am struggling with all of the sypmptoms of chiari. Not the sixty of them, but many, and both my daughter and I share the phonobhobia, or the aversion for noises. So her migraines are never over, they just reduce them.

What meds do you know about, and why can the opioids not be used? If she does not decompress, and you have the stories that doesn't always work, how does she live and function like this?

The dr. now is pressured, he is young, and Mel has the DEA profile watch, then discovery comes with ACM. SO she needs her pain managed, and this can be a challenge. The right drugs, the right levels, and the right management.

I see no easy solution, and I just take the pain, because a four or a five is not like a ten. She has a TEN, and takes it down to a five or so.

So this is not easy, and we need some HELP ... Gary Richards, 7 May 2007

 

 

I was diagnosed with mild Arnold Chiari about 5 years ago after having had seve4al seizures. I've had no problems until recently sudden pain on one side of my head near my ears. Since no doctor seems to know much about it, do you know if this could be from the chiari? It's not a constant pain - like someone hitting my on the side of the head ... Andi NIchols, 13 September 2007

 

 

Should someone with Arnold Chiari Malformation 1 be in the Marines? My nephew just enlisted. Is he at a greater risk of injury than if he did not have this condition? ... Denise J, 30 September 2007

 

 

my mom has this promblem. she had a surgery when she was and then again when she as 26. I was really scared when I first found out but now I know it's all in God's hands ... Kali, 30 October 2007

 

 

I've been dealing with my ACM for almost 20 yrs and could not find and MD that wanted to take the time to understand and help. I was always referred to a surgeon, and we know what they like to do, which I elected not to do until I could have more of a guarantee of the results. So here are a few things that I have found to work for me. 1.Find a really good Chiropractor and see regularly, before the symptoms are too strong. 2. Excedrine for migrane at the first twing and take 3, to kick it and always with a little food. 3. Get alot of sleep, the more the better. 4. Eliminate as much stress as possible, I know that's impossible but set boundry's it helps! 5.Take frequent breaks from work if at a computer. 6. Don't work at a job that requires alot of standing, it increases the symptoms. 7. Stay physical, the stronger we stay the less likely the ACM will win! 8. Keep your weight down, the more overweight the stronger the symptoms. 9. Watch the salt intake, the swelling can be brutal. Hope this will help someone. It's years of trial and error! ... Edie, 12 November 2007

Comments

Duann's picture

Dr. Oro

I had this Dr/ do my decompression surgery 5 months ago. A lot of the symptoms are much better. No more balance issues or scalp numbness, trouble finding words improved, ringing in ears improved, pain in neck improved but I am still having pain in right shoulder blade area.
I loved Dr. Oro! He truly cares about people. I am still fatigued but he told me recovery is 6 mon. to 1 yr.

Robin Neddermeyer's picture

Dr. Oro

I also had Dr. Oro as a surgeon. I really liked him. Where is he located now? I've been having more problems and would be great to see him if he's still in practice. Any help would be greatly appreciated.

Julia's picture

Hi Robin, Dr. Oro is in

Hi Robin,

Dr. Oro is in Denver Colorado, at the Aurora Medical Center area. I believe you can look him up online.

Take care,
Julia

Serendip Visitor's picture

5mm Herniation

My scans showed a 5mm herniation with full blown Chiari symptoms. I had surgery in 2005. While operating, another 6mm herniation was found that didn't show up prior to surgery. My neurosurgeon firmly believes that size DOES NOT matter.

stephanie mims's picture

chiari

does anyone know what the degree your herniation is suppose to be?
i was diagnoised with acm in sept 2010, andwill be seeing doctor john oro in colorado, and my paperwork shows slightly below 5mm...anyone with any info that can help i would appreciate it. thanks
stephanie

Julia's picture

Dr. Oro

Hi Stephanie,
I saw Dr. Oro last year and I have a herniation of 5-6mm. I am partially blocked according to Dr. Oro though other surgeons say I am almost completely blocked in the foramen magnum...
I have some pain too in my legs and arms. I am in my 40's and suggested I wait on surgery and that there were millions of people with my degree of herniation and living with it.
He also pointed out that I have herniated cervical disc and said that my pain in my neck and arms is probably from that. Did you have a cervical MRI too? I am having an epidural tomorrow to see if that will eleviate some pain. It will be interesting to see what pain disappears and which pain stays. I have leg pain and cannot figure if that is also from the Chiari...
Dr.Oro's office asst's are very nice. Don't forget to write down your questions and ask, ask , ask!! The appt. goes quickly.
Sincerely,
Julia R.

stephanie mims's picture

Hi Julia, I am glad that you

Hi Julia, I am glad that you wrote me back. I have had a complete MRI, and the last one was on my brain, and this is what they found. Majority of the days I cannot move because my neck is so stiff, and hurts so badly. My arms have gotten weaker along with my legs. i also have Fibro. But the reason why the did an MRI on my brain is because I have daily migranes, and I am not going to keep on taking these pills for this. I am so tired. I have applied for SSDI, and it seems that my body is getting weaker by the day. My paperwork shows I'm just below 5mm. Did you suggest you wait for the surgery, or was it Dr. Oro that suggested that you wait? I cannot wait, this pain is unreal. How long was the consultation? and I have my family coming with me. I am not comfortable driving because majority of the time I cannot move my neck. I wake up in the morning with migranes, and go to bed with migranes. I take percocet and Isometh for migranes.
Stephanie

Julia's picture

Dr. Oro

Hi Stephanie,

Dr. Oro suggested I wait and deal with my neck herniations first and then see how I feel afterwards. (I am having an epidural-45 mins. from now.) I have migraines on and off but not every single day. They come on and off and usually last a few days when they do come around. I have some pain in the back of my head everyday that I can tolerate...It stinks, but pain pills make me sick. I know it is all very confusing...obviously every one gets confused about where the pain is coming from, etc. I have a stiff neck and lower head/neck pain too. I can't turn my head around easily either.

Dr. Oro's visit consisted of 3 total days for me. First day, initial visit...only a few minutes. You have alot of forms to fill out! Second day, I had a cine flow and other MRI's done and a visit with Oro's nurse. 3rd day, he followed up with me about my MRI readings. I guess since your herniation is borderline so to speak....he may want you to get a CINE flow study done and see how well your spinal fluid is flowing to your brain. Everybody is different in this area apparently. Mine was partially blocked, but other neuros said I was more blocked than that for sure....I feel the pain when I try to exercise. I have leg pain too and feel much weaker than I used to. I am in my 40's which makes it even harder for the neuros, bec. of aging factors.
If you are staying at a hotel near Aurora, some of the hotels will give you a "medical break" on your price.

Good Luck, and remember to ask all your questions...those neuros can zip out the door quickly if you pause too long:)

Julia

Julia's picture

Age? I guess it depends on the person or the Dr.

Hi Stephanie,

I am not completely sure about the age factor and surgery bit...I just know what I have been reading for awhile now and how the "success rate" is lower for older people having decompression surgery. 'Things' in our bodies do not bounce back into place as easily as they did in our 20's and 30's:) Unless of course you have such a bad herniation, syrinx, or spinal fluid blockage that causes inablities such as using your hands or legs..etc., then surgery at any time would most likely benefit.
AS I SAID, IT IS JUST WHAT I HAVE READ FOR THE PAST 2 YEARS NOW ON THE INTERNET FROM VARIOUS PEOPLE. So many people have so many different post-surgery stories!!
My epidural went okay...less pain in my neck and rt. arm, though my legs are still hurting which means of course, the pain most likely isn't from my lower neck. My left arm still hurts some bec. the neuro focused on my right arm.
Make sure your family doesn't let you forget to ask your questions...I was alone when I was there.
You are lucky to be so close to Dr. Oro. I had to drive over 2000 miles total to see him. I read his book too, but have you read the other Chiari book by Rick L...? It is a somewhat large book but very well worth the time to read!! He goes into detail about his surgery and what it was like for him. I would definitely read it if you end up scheduling surgery...Read the book first so you know what to expect. They sell it on the ConquerChiari website...and I think book websites as well.

Julia

stephanie mims's picture

HEY THERE JULIA

OKAY, SO THEY ALSO LOOK AT YOUR AGE IN THIS MATTER HUH? I JUST TURNED 53, AND I HOPE THAT DOESN'T PLAY A BIG PART, BUT WHO KNOWS. I HAVE ALL THE PAPERWORK THAT I NEEDED TO FILL OUT AT MY HOME, BECAUSE I WAS SUPPOSE TO HAVE SEEN DR ORO ON OCT 29TH, BUT HIS OFFICE CALLED ME OCT 19TH AND TOLD ME THAT THEY HAD TO CANCEL MY APPT BECAUSE HE HAD AN ACCIDENT, AND THEN THEY RE-SCHED MY APPT FOR DEC 3. THEY GAVE ME SOME FORMS TO FILL OUT, AND THEY ALSO HAVE SOME OF THE INFO ABOUT ME FROM A DOCTOR THAT I VISIT IN THE SAME BUILDING ON THE NEXT FLOOR. AND THE MRI IS AT MY HOUSE ON A DISC, AND WAITING. I HAVE BOUGHT HIS BOOK THAT HE WROTE, AND I HAVE A FEW QUESTIONS, AND MY FAMILY WILL BE THERE SO I KNOW THAT THEY WILL HAVE A FEW QUESTIONS AS WELL. I LIVE ABOUT 15 MINUTES AWAY, SO I DON'T NEED A HOTEL. I HOPE HE IS AS GOOD AS PEOPLE SAY HE IS.
STEPHANIE

Isabelle's picture

Surgery

I'm 15 years old and am getting decompression surgery in about a week. I've been reading through multiple webpages and people's stories, and I've just started freaking out about what's going to happen after the surgery. Can anyone help me out with how much pain I will be in, showers, etc.? And what will happen while I'm in the hospital? Will I be fed through an IV, have a cathader(I think that's what it's called?), things like that. Thanks!

Jan 's picture

endoscopic endonasal approach

Does anyone know if anywhere besides Pittsburgh does this surgery? I would much prefer this surgery than having the back of my skull opened up!

Florence Gautier's picture

operation in Spain

Hello,

my name is Florence and i am french. We live in Germany, and my son Tristan who is 6 has been diagnosed with Arnold Chiari last summer. His symptoms were quite mild compared to many people (headaches, neck pain, vomit, hiccups, ankle pain).

We heard about a different theory for Arnold Chiari : some surgeons think that even if the MRI doesn't show it at all, the filum terminale (a cord that attaches the spine to the sacrum) pulls the spine cord downwards and with it all what's above (cerrebelum, tonsils, etc). Apparently some people have a filum that's either too short, or too thick, or too tense.
This theory is not widely admitted at all, and to be honest i don't think it can apply to any Arnold Chiari. Most surgeons believe it's just nonsense because they only admitt the small posterior fossa theory.
I have talked personnally to several people though, to whom it saved the life. Extremely mild operation, and great outcomes. Again, it might not work for everyone, and same as for the classic operation it can not heal severely damaged nerves. It can only stop the process and relieve the pressure.
But, i would say it's worth considering it.
My son had the operation done a month ago in Spain, performed by the Dr Royo. He is doing fine now, but again, his sypmptoms were quite mild.
I know at least another surgeon who sticks to the same theory : Dr Bolognese in New York. However, his procedure is different : he still cuts off the filum terminale but he does so right under the end of the spinal cord, so he opens the dura, whereas the spanish surgeon cuts it very low where there is no more dura (almost no risk at all). I still don't know why they do it differently.

I wish anyway good luck to everyone having to deal with this. I hope so so much my son can forget now about Arnold Chiari, but i do keep in mind that maybe he won't be among the lucky ones for which this operation meant the end of the trouble.

Florence

Serendip Visitor's picture

chiari and tcs

Hi Florence,

I am 46 years old from Canada (near Toronto) and I had surgery in 2006 for release of tethered spinal cord (TCS). This condition is present in many who suffer from chiari malformation. Even if your son has his cord de-tethered (which is diagnosed by an MRI to identify a thickened fillum terminale) it doesn't mean he will be problem free. I have always been in a great amount of pain (the neuro explained to me that the condition causes deterioration in the bony structure of the spine - mine was pretty severely compromised when I was de-tethered. I was told that unfortunately I would be in a lot of pain every day for the rest of my life. I have tried pretty much every pain killer on the market without success.
I began to have worsening neurological symptoms in the pasy year and have now been diagnosed with chiari malformation. People with one will often have the other. I had my cord detethered but was never checked for chiari - my neuro says the tethered cord most likely contributed to the chiari. He should definitely be checked for TCS.

LaurieAnn

jennie's picture

chiari 1

I too live near Toronto in Oakville, I have Chiari 1 and was decompressed a year ago at St. Mike's Toronto. It would be nice to connect with someone else going thru this. You can email me . I hope to hear from you. Jennie.

Serendip Visitor's picture

Chiari Type 1

Hi Jennie
I have just been diagnosed and very confused and scared. I too am in Oakville.
Denise

Nicole's picture

Physical Therapy

As a nurse, reading these postings, and having a) just gone through a decompression 4 weeks ago and b) having a fantastic neurosurgeon who actually knows how to teach and prepare patients for the future (shameless plug for Richard Schmidt at the University of Utah).......it seems like very few people get referred to physical therapy/rehab. I mean this piece is critical. How can anyone possibly think they can have a surgery that affects their neck muscles in MAJOR ways (the manipulation and incisions) and NOT have to go through PT/rehab to regain their range of motion and then strength train them to a place where you can hold up your bowling ball of a head again. It's a mandatory piece of recovery. If you don't do PT, you run the risk of stagnation in your recovery, which it seems like alot of decompressed patients do at around 6 mos.

My neuro told me it was mandatory I start PT immediately after my surgery, and that I needed a PT with neuro experience. He wrote my prescription, and made sure I understood that I had to this. Please Please, if you are struggling, ask your surgeon or your neurologist for a PT consult, and get some help. Those neck muscles have a big job to do, and they need help to heal and be able to do it. (again, they've been cut through, and manipulated during surgery...and when I say 'manipulated', I mean like moved off your skull bone for several hours manipulated.....YOW)

(Granted this isn't for everyone, but for a somewhat standard Type 1 ACM decompression surgery)

So take it from an old nurse with a good neuro and now a great PT, and maybe it'll help some of you.

Best, Nurse Nik

kendra menzler's picture

my daughter is hospitalized in AZ

we got told over 6 yrs ago now about my daughter, now almost 18, having Chiari, that happened in the ER because I demanded that they check every part of anything with her, she was blacking out A LOT. the b/o's & crazy head-aches lasted 4 about 3 yrs, then she got pregnant & the b/o's got worse... then in Dec. of 08 she had her 1st "confussed & demobilizing" experence.. since there has been 4, including her current visit.
PLEASE CAN ANYONE TELL ME OF A DR IN AZ THAT KNOWS ANYTHING ABOUT CHIARI?????

Beth Harada's picture

Chiari 1 specialist in arizona

I live in Phoenix ,AZ. I am having the Chiari 1 surgery next week at Barrows Neurological Institute, at St Joes. Hospital, Phoenix. I am an RN, and researched the local brain surgeons carefully. I recommend Dr Kris Smith, Neurosurgeon, at Barrow Neurological Institute. Phone # is 602-406-7750. He specializes in a minimalist approach, and has done hundreds of these Chiari 1 surgeries. By the way he also did my sons epilepsy surgery, a huge success with minimal incision/ scar tissue effects. I Highly recommend Dr Smith ! I asked around the hospital ( I worked there for 10 years, and found him to be very highly recommended by OR staff, recovery room RNs, and floor RN's. Good luck to your daughter, she needs to be seen by such a specialist, and will be treated as needed. Sincerely, Beth Harada

kita's picture

acm 1

trying to find out more info on this topic. I was diagnosed with having acm type1 after dealing with severe headaches and neck/shoulder pains a couple of days after being in a car accident while sitting at a broken street light, rear ended. had 2 mri's done, the first one they thought they spotted a cyst but later did a second mri w/contrast and stated there was nothing found. I went thru the pain of headaches that were unbearable in the back of my head and it just burned all the way thru my neck to my shoulders. i was told physical therapy would help relieve the headaches and neck pain, so i did that for about 5mos. 3 to 4 days a week. That helped while i was there and maybe thru out the rest of the day but the headaches seemed to be most harmful in the mornings before i left for work. after the mos. of P.T. i was sent to a neurologist who took one look at the films and diagnosed me with having acm. Mind you, i have never had any history of the symptoms i have been reading about until this accident. My neuro. advised that the neck pain was from the mva and that the acm was 6 to 7 mm. he never even told me what acm was other then it was genetic and was a small opening in the brain. it was only until i started researching the web i found this to be very serious. It has now been over a year since my accident and my condition is getting worse. I am a very small framed person and they want to put me on all this medication and expect me to go my 40hr a week desk job. The headaches are getting worse the burning in my neck and shoulders are starting to be unbareable, i dont have a life anymore because i have no energy thru out the day. Does anyone know if this acm is something i could have encountered from the accident. no one in my family has ever suffered from any of these conditions and i need to know what i have to look forward to down the road. Its almost like my life has come to a holt all from one occurrance. thanks for listening.
looking for answers....

dave's picture

Yes

yes, chiari 1 can become symptomatic after an accident. I know mine definetly has, but yet, it all depends of the type of trauma sustained. Good luck to you.

adriane kelly's picture

this is crazy

I had decompression surgery over a year ago. Alot of people on this site are treated as I am. the nerologist said i have rebound headaches from pain meds, They look at me like a drug seeker.Why can't doctors believe the surgury helps but dose not cure. they keep giving me variose drugs like anti sesure or anti depression drugs because they are non addictive but they have so far only messed with my mind and/or body. I don't want to be on drugs but the daily pain is hard to handle.IF any one knows of any doctor who understands what we are going thru,please let me know. I live in PA but will travel to find someone who can truely help.None of us deserve the doctor thinking we are faking to get drugs. This is a misrable condtion and there has to be answer to stop our suffering.It is hard to believe there are so many of us out here and no one to help us. We all know the pain maybe together we can find some one with an answer.collective consiouse may help.
adriane

Serendip Visitor's picture

Doc. That Help.

I live in Dallas Texas and I have been threw a lot since 2007 I had a work accident 2007 and low back surgery in 2009. Not four months after that I was in a auto accident and it herniated 4 disk in my neck and caused a Chairi Malformation I with a 6 to 7 mm herniation I have never had headaches like this I have hallows in my vision, ringing in my ears sometimes the side of my face is numb and I get the worst pain that shoots from the base of my head down my spine and it feels like it my spinal cored is drying out that is the best way to put it. And I the last month or so my body temp I have to stay where it is like 75 or below if I get where it is hotter my skin feels like fire ants are all over me and I ich and my skin is on fire. Can you help me. The Doctors name is Dr.LLoyd Advance Pain Management
in Dallas Texas

shorty's picture

Hi I am currently going

Hi I am currently going through the same symptoms, I am 21 years old and was diagnosed with ACM1 about a month ago after my feet began going numb. I have had extreme heat in my legs since I ws about 8 years old. I also had pain and the drs always said it was growing pains or from grunningf too much because I am a runner. Did your dr coduct a nerve test because the nerve test is what led them to do more testing because ACM can cause damage to nerves. I am goung to see a surgeon in a few days, but I think a nerve test could explain a lot it did for me. Good Luck and Best Wishes

Serendip Visitor's picture

tonsil herniation not sufficient criteria for ACM I diagnosis

My name is Sarah. I'm 27 years old and have a ACM I. I had decompression surgery in January of 2008. I had headaches as long as I can remember as a child, but they just became a part of my life, I guess you could say that I gave up because no medication I was offered helped. I sept. 2006 I was in a car accident. we were going 35 when a car pulled in front of us to cross and we had no time to stop. I had severe pain beyond what any of the doctors could comprehend. For months I had this pain. I found out that I was pregnant about 5 months after the accident and for some reason, along with my pregnancy, all of my pain subsided.... huh. Maybe the doctors were right and it was just typical whiplash, after all I had X-rays and a couple MRIs that revealed nothing remarkable. All of my pain was in the upper thoracic region. I think this was another reason that the doctors thought I was crazy/drug-seeking. My pain was gone, I was having a baby, loved my job so I practically forgot all about it. I went back to school when my daughter was 4 months old. I think it was about three weeks into the semester when in one instant, everything came back. The pain in my thoracic radiated all throughout my chest cavity, it felt as though I had had the wind knocked out of me....all the time. every kind of pain I could think of, even the skin on back felt like it was burning.. no one could even touch me. I made it through training as a surgical technician while taking methadone hcl for my pain. I landed an internship in a small surgical suite specializing in plastic reconstructive surgery. After about 9 months working there, I finally felt comfortable to talk to the doctor that I worked for about my problem. At this point I was beginning to lose function in my arms. He immediately scheduled a consultation with the best neurosurgeon he knew. Dr. Dominique Engel. I live in Chico, CA, a college town with about 100,000 people and this surgeon was in Oroville, a much smaller neighboring town. She just happened to sub-specialize in Chiari! at this point my symptoms were worse by the day, every morning I woke up unable to move or feel my hands and each morning it went further up my arms. drop attacks, vertigo, heart palpitations ears ringing, etc. So I decided to have the surgery. Dr. Engel was one of the few doctors who did the tonsillectomy. I haven't felt my back pain since the morning before surgery, and healing took months. When the tonsils put so much pressure on the brainstem, cranial nerves have to be involved. She told me (dr Engel) that many of my higher number cranial nerves were kinked or twisted and that after making all the extra room during surgery, they have to naturally return to normal positions during the time after surgery. I had more painful and strange symptoms after surgery that I ever had before, including bells palsy! half my face was paralyzed for about a month, then returned to normal, increased vertigo, drop attacks, and excrutiating indigestion. It's been two years and 7 months since surgery. I still have headaches about once or twice a month, decreased feeling in my legs and I lose my balance if I lean my head in any direction. It's taken lots of time and work to be able to accept my disabilities, I thought that I would be 'better' after surgery, but unfortunately my compression was severe enough and untreated long enough to cause nerve damage. I do have advice to offer. I only showed a 4mm herniation on my MRI, my doctor gave me the surgery anyways, during which the herniation measured 10mm. We do not live our lives lying on our backs as in a MRI machine, chances are that if you had one done sitting or standing that it would be a different story. Find another doctor! The level of dissent of cerebellar tonsils is not a sufficient way of diagnosing ACM. There has been enough controversy to necessitate a study using patients with 5mm+ herniations and those presenting symptoms without herniations: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1343586/ so they've found that tonsillar herniation is not sufficient in diagnosing ACM I? huh. Maybe show this article to your doctor who says that your small herniation couldn't be causing those symptoms. Your doctor might believe you have it and still not be honest. My neurosurgeon is no longer performing decompression surgery because she got into trouble for decompression suffering patients who didn't not meet this 5mm criteria. Sorry if my post is all over the place, hope it was somehow helpful.

kristen's picture

PS...Someone tell me a happy chiari story!!

I have just gotten on this site, and have not seen many happy outcomes for the surgery! I need to have this done, but am not getting any good vibes here!! Happy story please???

Shar's picture

Heya hun,Had mine in feb and

Heya hun,Had mine in feb and still recovering.I'm back in work etc but very tough.
I can't give you wonderful stories about it other than i'm alive and get to spend another day with my kids and Hubbie. Good luck.
Shar from ireland.xx

Serendip Visitor's picture

Surgery

Hi Shar, I've been diagnosed with this and I am in the middle of deciding whether to go ahead with the surgery. i have been advised I should but all the stories are making me wonder. I live in Dublin and was wondering where you had your surgery and with what surgeon ?

Thank you,
Dee

sharon's picture

Chiari

Hey Dee,
I had it done in Beaumont and the surgeon's name is Mr. Donnacha o Brien,He is a brillant man and speaks to you like a human and explains things in laymans terms.Good luck and let me know how you get on.
Shar.x

Tiffany's picture

Happy ending so far...

Kristen- I was born with ACM and it was not discovered until I was 13. My only symptom was a pain in my right shoulder (nerve damage). My ACM was pretty severe by then that I under went an 8 hour surgery with lots of recovery. Not fun for a teenager, but it saved my life. Every year I see my doctor and have a yearly MRI to ensure that it hasn't returned. I am now 29 and grateful that it has not returned. If you are looking for a great doctor, I highly recommend Gene Balis in Tampa, FL.

kristen's picture

Looking for Doc in Dallas/Ft. Worth

Recently diagnosed with a 19mm chiari, same symptoms as others on this site. Compression is bad, need surgery ASAP... looking for a doctor in DFW that specializes in Chiari...Anybody have any names? Thanks for any input...

Serendip Visitor's picture

Dr. David Barrnet

This Dr. was recommended by one of his patients above. Downtown Dallas. I would google him. Good luck...

Serendip Visitor's picture

Thanks!

Thanks for the name, DrBarnett has come up a few times now...I am going to see him on the 26th...

Adriane Kelly's picture

Post operation proplems

I had decompression surgery Feb 2010 in Shadyside Hospital Pgh. PA. were they put a plate in the back of my head. I went back to work,my headaches lessened but never went away. I had a MRI at 3 months and my syrinx had dissipated. I still have fluid along the out side of my spinal column which Dr Bejjini had never seen before.Great.I will get another MRI in a year to see if it is doing any thing.

My problem is the my quality of life stinks. I have headaches that feel like the is a bungee cord wrapped around my head all day.Neck and shoulder pain every day.I get numbness in my fingers and sometimes lower back pain that radiates down my legs.I am depressed and have anxiety.I have no energy and want to sleep every chance I get.

The doctors had me on Lexapro for depression , Klonapin for anxiety, Darvocet for pain,and Baclafen as a musle relaxer for when my back is real bad.This regime was helping but just barely. My GP sent me to a neurologist who said my headaches were just rebound from taking pain pills and took away the darvocet and gave me Topamax. Now I don't know if I am coming or going. I am walking around in a fog, repeating myself and the pain all over my body is driving me to wish my head would actual explode instead of just feel that way.

A friend told me that a neuro-psychologist might be the doctor to go to. The ones I have been to are only concerned with not giving any meds that could possibly be addictive no matter what my pain level is or the side effect of these "safe" pain relievers.

Also A weird thought came to me at work the other day. My job is road construction and we have been having a bad heat wave here in north western PA (100 degrees last Friday).So I was wondering if any one else that has the plate in their head thinks it might heat up and effect their thinking or possibly even be dangerous?

So sorry for rambling on but I am in a very bad way this week end with no one around who understands. I live in a small town and there is no medical advise on the weekend. Any input would be greatly appreciated....Thanks

Serendip Visitor's picture

chiari

I do know what you're going through, the bad thing is, because outwordly, we appear to be fine, others think we are "doing it for attention". I had a brain tumor in 2007, and was diagnosed with the Chiari/syringmylia at the same time, after the surgery for the tumor, my problems began with the Chiari...there is no "specialist" in this medical condition in Canada, at least not that I can find. So I live with the pain on a daily basis, and it is getting increasingly more difficult. I wish you all the luck with this..I am a believer in prayer, and I do alot of it !!!! I am considering going to a center in the U.S. to find out what can be done, just to relieve the symptons would be nice ! I am now on morphine, which helps with the cronic pain, but certainly is not a long time solution...like you I live in a small community, although I am only 40 minutes from a large city, getting to and from doctors can be troublesom most days....The only good thing for me is that my husband is a very understanding, loving person, and my GP doctor is amazing also...helps to have support. Wishing you the best..and please know you are never alone..Dianne

JDL's picture

My diagnosis

I'm from Ottawa, Canada and was brought to the hospital about a month and a half ago when I was having a severe headache that made it tough to walk in a straight line. They did a CT scan and after finding nothing, did a lumbar puncture to see if there was bleeding in my brain. Again, they found nothing and released me. Few hours later, brought back in because I had started vomiting and they had no idea why. Checked over my CT scan again and found what looked like cerebellar tonsillar herniation. So they scheduled me with Dr. Benoit who is basically the best neurosurgeon in Ottawa. He had me get an MRI where they confirmed ACM.

Now I don't know what is going on because apparently having headaches now on a daily basis, occasional dizziness, lack of concentration, and yesterday numbness of my legs for the entire day isn't enough reason for surgery.

Serendip Visitor's picture

Hi there, I am in Ottawa as

Hi there,

I am in Ottawa as well & have ACM. My neurologist is Dr Rabinvotich in Centrepointe. He is the top NL at the Queensway Hospital. I highly recommend him or Dr Borque at the Civic Hospital, he is the top NL there.

Good Luck!

Sara Scheidel's picture

Here's some help people!

I have ACM and I had the surgery. Everything was great for about 4 months. Then it all started coming back. About 3 months ago I was having a two week please just kill me migraine. I went in nearly every day for injections in my neck, head, shoulders,and rear end. Nothing was killing this migraine. My daughter was holding my head as I threw up over the side of my bed when she just pulled a little. She extended my neck just enough to take the pressure off. I instantly felt some relief. I asked my doc for a cervical collar. It holds my head for me now that my neck muscles are complete toast. I wear it 80% of the time and have had 90% relief of the migraines,neck pain and burning sensation, shoulder throbbing and arm pain. Chest pain and stumbing when I walk. I haven't taken any of my pain meds,migraine meds, muscle relaxers, nerve blockers, stomach pills, or depression meds in weeks! So get yourselves a cervical collar and see if it helps you. It is only temporary fix but I don't want to do the surgery again. It was the most scary thing in the world for me.

Worriedforafriend's picture

I live in Brisbane, Australia

I live in Brisbane, Australia and recently my friend was diagnosed with a Chiari 1 malformation. Within a month after the diagnosis, she was admitted into the hospital for surgery and as I write this, it is the very day after the surgery. Her symptoms were headaches, vertigo, nausea, loss of feeling etc and she is also a celiac and 19. I have been researching this condition to the best of my ability but I've found very little information on recovery from the surgery, mainly just the return of symptoms.

I am quite confused about recovery. I have read a lot on the internet stating that recovery is fine and that some people are up and moving by the end of the first week and that they have hardly any pain at all. However, as I was sitting in the waiting room, her mum told me that she would have severe pain for 6-8 weeks, be immobile for the first few days and unable to move her head for at least a day or two. She said, "the problem is that this is quite a rare case," I asked if this was because of her age and she replied that it is not the age but the severity of the malformation that was concerning. Her nuerosurgeon is Dr. Campbell at the Mater Private Hospital. It seems that many posts on the internet seemed to be downplaying the severity of the condition and the surgery and once I spoke to her mum and dad (who is a doctor) about it, they assured me that it was major surgery and incredibly serious.

Does anyone have any information on the recovery from the surgery as most information seems to focus on the few months after the surgery is performed.... ?

Tim Pogue's picture

Chiari Recovery

My wife had the surgery on 9/9/10 she was released on 9/12/10,as of today she has had dizziness,nausea,some severe head pain,I've never seen her so miserable,her Dr. told her to stay put for 4 weeks

kathryn's picture

recovery

Hi, I am 19 years old and had the surgery when I was 15. It is a serious surgery but I had a great doctor. My recovery took a while but I was up and around about 2 weeks after my surgery. I was in the hospital for 7 days instead of the three days. The recovery is not awful as long as you take it easy and don't put strain on
yourself. If you get plenty of rest, you will have a speedy recovery.

Maureen's picture

Recovery after Chiari surgery

I just recently saw on article on this topic:

Go to www.conquerchiari.org
Go to Rays Corner
Go to Read Past Articles by Ray
Go to Recovering from Chiari surgery

Hope this helps,
Maureen

Doreen's picture

successful surgery

wanted to just add our story:
my son was diagnosed with Arnold Chiari Malformation when he was 3 1/2 years old. (he is now 16 1/2). The first neurosurgeon we saw said surgery was mandatory and he was going do the usual surgery at the time -- they would make the foramen magnum larger for fluid to travel up and down the spinal column, around the protruding tonsils. As with anything we do medically, I got a second opinion, from a neurosurgeon in NYC, Dr Fred Epstein. (you can look him up on the web, he was a true fore-runner when it came to innovative pediatric neurosurgery. He has since passed away,but he trained many doctors before he died.)
He had the surgery in November 1997. He was almost 4 yrs old. This dr had invented a new surgery for this. (I dont know, maybe it is common place today. I am throwing it out here in case it is not)In layman's terms, he made the hole bigger, took off the tips of the first vertibrae, and put little electrodes on the tips of the brain tonsils dipping into the hole, and zapped them. They retracted back into the skull. I saw the 'after' MRI photos and it looks like a normal brain. When I asked the dr what he would be able to do now...he told me that the regular surgery would help relieve symptoms but would have to be careful, no contact sports, etc...with this surgery, he told me that my son could do anything he wants,...football, karate,anything....my son chose ice hockey, which as you can imagine is a very high contact sport. He has been playing for 9 years now, and is fine....I fear for the other boys he checks,not him....lol...
He occasionally gets migraines but there is a history of that in my family and it is not related, and we can usually relate it to too little sleep or hayfever or stress..he is a very active boy.
I guess I wanted to post this for anyone who is just finding out about arnold chiari and is scared....and maybe in case the surgery my son had is still not the norm...I don't know...we have never had to go back to a doctor for it or anything so I do not know what is done nowadays....and I am reading and seeing so many still suffering.. :-(
My son plans to join the Navy or go to college with a Navy ROTC program. I am only praying that they do not see the scar on the back of his neck and keep him from being in the Navy because of the problems they would see if they look up chiari... as he has none of those problems...
I dont know if this will help anyone...I only recently looked it up again, and was surprised to see so many still having problems after surgery. It saddened me and I had to write.

nana's picture

yea that helps, the way I had

yea that helps, the way I had it done they say it has to be repeated in ten years!! Im due now and having all kinds of problems.

Serendip Visitor's picture

chiari kids

I lovely to hear your son is doing so well. I found everyones stories really depressing. I wonder if the difference is how young your son was when he had the surgery. I think the longer the person has the chiari causing damage the more long term the effects are. Or maybe thats what i hope. my five yr old son had his op a few months ago and currently is still doing well. Long may it last and may things change for chiarians having to fight for such a long time before they are diagnosed and then treated.

charlotte belcher's picture

chiari I malformation 4mm

i have the same problem as some of the rest of the people on here, i am seeing a neurologist and medical physician who thinks i am crazy and keeps giving me pain meds but i recently found a neurosurgeon in miami, fl i'm going to see on the 18th and 19th of this month and he sounds pretty positive to me. hopefully i can get the surgery. i was given a website as to which i found the dr. from another neurosurgeon that speciliaces in children only, they have a dr's list for the United States and for outside the United States. it's www.wacma.com for anyone who needs it.

Sue's picture

Well, i live in Saskatoon SK.

Well,
i live in Saskatoon SK. Canada and I am trying to get help with a 7 year headache. My CT scan shows "some protrusion of the tonsils" but no one will tell me what that means or thinks its causing all my problems or my headache and no one will do an MRI.
I recently found a doc in Texas who says he can treat Chiari 1 without surgery... check him out.

www.drmccarty.com

I e-mailed him and he replied right away. I lost my job cuz I can no longer function well... so there is no hope for me to go see him but maybe some of you can. Good luck.

None of us should have to live in a prison of pain!!!!

angel thompson's picture

to sue!

Hello sue my name is Angel and I live near Edmonton Alberta. I have Chiari Malformation 1 and a severe case. I had my surgery 5 years ago. I went to Calgary to the Foothills Hospital. My Doctors name is Dr.Hurlbert and one of the best neurosergeons around to my knowledge and I also did lots of research on him as well! To my knowledge the ONLY way to verify ACM is by an MRI.!! At least thats what my doctor had told me! I had had all kinds of tests and xrays and everything as well as mri's but they werent looking for ACM so they didnt find if until my doctor was specific and asked for them to LOOK for it!
I had been having headaches since I was about 7 or 8 years old and was told it was migraines. As I got older the symptoms got worse then when I reached about 30 to 33 they got really bad to the point that I could barely go to work I could not do any normal things at home like cooking cleaning or vacuuming. I could not do anything with my kids cause any activity or strain would cause this EXCRUCIATING HEAD PAIN but it wasnt like a headache it was more like someone had their hands around my brain literally and they would squeeze and then let go continually for hours sometimes! It would also happen when I sneezed, coughed, laughed, bent over put my hands over my head, yelled, and the list goes on... I finally went to my family doctor who, bless him sent me to every known doctor and test to try and fix me! After 2 to 3 years of that I had had enough because the doctors said they just couldnt find anything wrong with me and they would insinuate that I was ..well Crazy???
Then one day out of the blue my girlfriend left me a magazine with an article about ACM and the symptoms sounded similar so I took it to my doctor and the rest is history.... ended up having 2 surgeries which in total was about 22 hours and was in hospital for about 2 and half weeks. Then spent 4 and a half months in a cervical collar!! Its now been 5 years and I am now having some weird things happening with numbness of my upper body and head still have the ringing in the ears, also have RLS which just recently has now become quite bad.. so off to the doctor I go again to see if there is something else? Anyway I hope this long winded message helps and since your not the far away maybe look into the Doctor I mentioned?
I hope everything turns out well for you and yours....
Angel

Santacha's picture

worried

hello people my name is santacha . im from Connecticut & i am 18 yrs old. i was told that i have chiari malformation 1 about a year agon and ive been researching it. it seems to me as if my doctor is taking things to lightly because ive read different thing that can happen to a person that has cm. such as vision loss paralization and even death. he has never mention a surgery to me or anything of that matter and im a little worried. can someone help me. should i get a new neurologist? or a second opinion?

Serendip Visitor's picture

Go get a second opinion. I

Go get a second opinion. I have had a headache for 6 weeks now and the dr I was seeing acted like I just wanted pain pills. After telling me nothing was wrong and that I could see a neurosurgeon in 3 weeks, deal with the pain, I went to another doc. She is sending me to a surgeon and knows what is it and what to do. ALways get a second opinion if you dont like the first. Listen to your body and dont stop until you get the right answer.

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